Patient Perspectives on Group Benefits and Harms in Genetic Research
Presented By: Aaron J. Goldenberg, Sara C. Hull, Benjamin S. Wilfond, Richard R. Sharp Department of Bioethics, Case Western Reserve University, Cleveland, OH, USA. & Department of Clinical Bioethics,
Aaron J. Goldenberg, Sara C. Hull, Benjamin S. Wilfond, Richard R. Sharp
Department of Bioethics, Case Western Reserve University, Cleveland, OH, USA. &
Department of Clinical Bioethics, National Institutes of Health Clinical Center, Bethesda, MD, USA. &
Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital, Seattle, WA, USA. &
Department of Bioethics, The Cleveland Clinic, Cleveland OH, USA.
The recent creation of several large sample collections to facilitate population based genetic studies has intensified debates about the potential impact of this research on historically disadvantaged racial and ethnic communities. On one side of these debates are those who worry about the discriminatory potential of genetic research, while others worry that the benefits of genetic research will not be distributed fairly. Nevertheless, efforts to minimize harms in research studies have traditionally focused on the protection of individual research volunteers, which has made it difficult to achieve consensus on how best to address concerns about the long-term impact of research on socially identifiable social groups.
In this presentation we report findings from a recent study concerning patient’s beliefs about the potential impact of genetic research on racial and ethnic communities, including the extent to which potential group benefits and harms may influence patient willingness to participate in a genetic study. Our findings suggest that a key factor in many patients’ decision to donate samples for genetic research is how future studies may impact the racial or ethnic communities with which they identify. This presentation will discuss how these broader group-level implications of genetic research should be taken into consideration by those engaged in genetic research or planning for the creation of a biobank. We will also discuss how increased communication and dialogue about potential group harm, and the creation of “community or group focused” educational materials for patients, will be important steps in building trust between participants and researchers.
22 (Thursday) 12:00 am - 24 (Saturday) 12:00 am